A guide for families deciding on organ, eye and tissue donation When your loved one dies
2
Benefits of Donation Donation may help you with your loss. Organ and tissue donation is a unique opportunity to save lives. It is possible for a single donor to donate organs and tissues that can help 50 or more people. Most families find that donation helps with the grieving process. It gives some meaning to their loved one s death. Transplantation gives recipients a second chance at life. They are able to lead normal, productive lives. Tissue donated for therapeutic purposes helps people heal and live a life free of chronic pain. Major religions support donation and consider it an an act of charity. It is a way to affirm your loved one s generosity and goodness. If you have any questions about the beliefs of your religion regarding donation, please discuss them with your spiritual leader. If you are told that organs and tissue cannot be transplanted, you can offer your loved one s organs or tissues for research and education. This is a valuable gift to science. If this is a choice you would like to consider, be assured that dignity and respect will be maintained at all times. 3
Introduction Thank you for taking a moment to read this important brochure. We understand that this is an extremely difficult time for you and your family. May the love and support of others help you as you cope with your loss. It is our hope that this brochure will answer your questions about organ, eye and tissue donation and guide you while you make this important decision. We want you to feel comfortable about your choice and will support whatever decision you make. Your comfort is our first priority. A Gift of Life Michigan or an Eversight Michigan donation professional will be available to answer any questions you may have. We will do whatever we can to help you make the decision that is right for you and your loved one. Gift of Life Michigan 3861 Research Park Drive Ann Arbor, Michigan 48108 www.giftoflifemichigan.org General: 866-500-5801 Customer Service Line: 866-500-5801 ext 1411 4
What can be donated? Organs such as kidneys, heart, lungs, liver, pancreas and intestines are recovered in a hospital operating room or surgical recovery center for immediate transplant. You may choose to direct any transplantable organ to someone who is registered at an approved transplant center in the United States. You will be asked to provide the patient s name and the contact information for their surgeon so that the organ(s) can be tested to see if they are compatible with the recipient you have chosen. If a physician determines that the transplant cannot happen, the organ(s) will be offered to someone else on the waiting list. Tissues such as whole eyes, corneas, skin, bone, tendons, heart valves, pericardium, blood vessels, nerves and other important donations are recovered in a sterile environment and are sent to a tissue partner before release to a physician. Donation will not cause any pain. After the brain has died or the heart has stopped beating, donation of organs or tissues will not cause pain. If you have any questions about the ability of your loved one to feel pain, you should discuss your concerns with a doctor, nurse or donation professional. 5
What is the use of the gift? Transplantation and therapy are the primary uses of recovered organs and tissue. Transplantation is the recovery of an organ for the purpose of saving another s life, such as a heart transplant. Therapy is utilizing donated tissue to enhance another s life, such as using processed bone in orthopedic surgeries to repair a spinal injury. Other therapeutic uses of tissue include treatment of deformities, reconstructive surgery needed because of illness or trauma, corrections of abnormalities of the heart or heart bypass surgery, and wound protection. Research is the recovery of an organ and/or tissue for the advancement of medical science. An example is a liver placed in a research organization to study liver disease. Education is the recovery of an organ and/or tissue for professional education. An example is a lung utilized to educate donation professionals on how best to maintain recovered lungs on a machine. Donated gifts must first be considered for transplantation and therapy before being offered for research and education. Organs and tissues that are recovered, but cannot be used for transplant, will be provided to legitimate institutions for research and education. 6
What is the process? Hospitals are required to call Gift of Life Michigan to report all hospital deaths. Gift of Life Michigan will dispatch a staff member to the hospital if the patient is on a ventilator to evaluate for organ donation and to speak with the family. Only after all attempts have been made to save a person s life does the donation discussion begin. If the patient has died, a donation professional from Gift of Life Michigan or from Eversight Michigan will evaluate for tissue or eye donation and may contact the family by phone for the opportunity of donation. Authorization for donation can happen in two ways. A person can indicate their decision through first person authorization, such as joining the donor registry at the local Secretary of State office. If that did not happen, the family may be asked to authorize, or give permission for, donation. In all cases, the donor must meet medical criteria for organ and/or tissue donation to take place. Medical records of the donor are also reviewed. This may include patient charts, laboratory results, photographs and autopsy reports. Gift of Life Michigan will also speak to the family or authorized person about donation. A series of questions, known as the medical and social history, are asked that are necessary for placement of the donated gifts. 7
There is a delay in the release of the body due to the process of donation. It takes approximately 24 hours for a kidney to be transplanted and about 12 hours for all other organs. Tissue donation is usually 12 to 24 hours or less. The organ transplant recipient must be registered on the organ transplant waiting list through the federal government. They may be a patient at any approved transplant center in the United States. If there are no recipients in the United States, organs may be offered to approved transplant programs in Canada. Allocation of organs takes place according to the rules and regulations of the federal government s oversight agency, the Organ Procurement and Transplantation Network. Following recovery, tissues are sent to special processing facilities. The facilities further test, evaluate and prepare the tissues for transplant. The cleansed tissues are then stored until needed by a surgeon for transplant. Tissues are recovered for not-for-profit organizations, though some tissue may be placed with for-profit organizations, for distribution in the U.S. and/or internationally. A list of these organizations and their use of donated tissue is provided at the end of this document. 8
What is first person authorization? Sometimes, the decision to be a donor is made by the person during their lifetime. When Gift of Life Michigan is notified of a death, we are required to check the Michigan Organ Donor Registry to see if the person is a registered donor. You may also be asked whether you are aware of your loved one completing an advance directive or carrying a donor card in their wallet. Your loved one made an independent decision to become an organ, tissue and eye donor upon their death. They intended their gift to be used for transplant, therapy, research and/or education. All of these uses are noble and help others deal with lifedebilitating illnesses. Your loved one s decision to donate is similar to a will, in that it is a legal document. You will be offered proof of your loved one s decision, such as a copy of their donor registration, as part of the donation process. You are still needed to make the donation happen. You will be asked a series of questions regarding your loved one s social and medical history. Recent medical charts will be accessed in an effort to facilitate the donation and there may be some medication administered or procedures initiated to fulfill your loved one s decision. Your donation professional will discuss all the steps of the process with you and keep you informed of what is occurring. You are an important part of helping fulfill your loved one s decision. 9
What is brain death and circulatory death? Brain Death is the complete and permanent loss of brain function. Brain death is recognized as death both medically and legally. Doctors who are not involved with transplants perform tests to confirm brain death. After a person has been declared brain dead, a breathing machine will continue to artificially maintain organ function for a short period of time. If you choose not to donate, the machine will be turned off by a doctor. Circulatory (or cardiac) death occurs when the heart has stopped beating and no longer pumps blood through the body. If you have made the decision to discontinue or decelerate care, you may be approached by Gift of Life Michigan to discuss the possibility of donating after circulatory death. Donation After Circulatory Death (DCD) may require specific medications to be administered and procedures to be completed to make donation possible. Some of the procedures include central line placement, lymph node excision and bypass circuit cannulation. The hospital healthcare team will obtain additional authorization for these procedures. Your Gift of Life Michigan donation professional is also available to explain these medications and procedures to you and your family in the event that they are needed. 10
What happens after donation? Normal funeral arrangements can be made. An open casket funeral can be held after donation of organs and/or tissue. You can have a traditional funeral after donation. If you have any special burial plans, please discuss them with the donation professional. Gift of Life Michigan will work with your funeral director to meet your wishes. Please keep in mind that funeral arrangements are the responsibility of the authorized person. Transportation of your loved one s body to another facility may be necessary for recovery of organs and/or tissues. Gift of Life Michigan will cover the costs associated with transporting your loved one for the donation. Standard transportation costs that would have occurred without donation, remain the responsibility of the family. For example, if your loved one is transported back to the medical examiner or hospital following recovery, transportation to the funeral home afterwards remains the family s responsibility. Gift of Life will communicate to make arrangements with the medical examiner and your funeral home of choice. A medical examiner or investigator will become involved if the death occurred in a suspicious manner or resulted from an accident or an act of violence. Sometimes, the medical examiner will order an autopsy to determine the cause and manner of death. Autopsies cause a slight delay in the release of the body to a funeral home. A medical examiner s involvement may not prevent donation. 11
Medical records of the patient may be obtained from the physician or hospital treating the donor. A copy of medical records related to donation may be obtained by sending a written request to our offices. There is no cost to the donor family for donation. Donation is a gift. The family of the donor is responsible for hospital charges not associated with the donation and for funeral arrangements. If you should receive a bill from a hospital or a funeral home that you believe includes questionable costs, please contact us immediately. Donations are always acknowledged by Gift of Life Michigan and Eversight Michigan. To extend our deep appreciation for your generous decision and support of your loved one s decision, you will receive a letter within one month after the donation. The letter will contain information about the donation. Other support materials may be offered to you at that time. It is possible to contact the recipients of the gifts. Although donation is an anonymous gift, donor families and recipients often exchange letters. Gift of Life Michigan has a packet containing cards for donor families to send to their recipients. Contact us for details on how to initiate correspondence with the recipients of your loved one s gifts. 12
Donor Family Resources Gift of Life Michigan can provide additional information regarding your donation and organ and tissue transplantation. We offer many opportunities to volunteer in the community and can train anyone interested in speaking in public about their experience. The Donor Family Advisory Committee (DFAC) is a group of people who have lost a loved one who has given the gifts of life, sight and/or mobility. The DFAC is overseen by Gift of Life Michigan with the support of Eversight Michigan. The committee meets approximately four times a year to provide input to both organizations on best practices to support and honor donors and their families. All donor families are welcome to join the DFAC at any point after their loss. Visit giftoflifemichigan.org or contact 866.500.5801. Eversight Michigan is located in Ann Arbor. Its mission is to preserve and restore sight through transplantation, research, education, and partnership. Visit eversightvision.org/ Michigan on the donor family tab under communities or contact 800.247.7250. For Those Who Give and Grieve is a publication of the National Kidney Foundation. Visit kidney.org/store or contact 800.622.9010. 13
Bereavement Resources Provided below is a listing of bereavement resources in Michigan. This list is not considered to be inclusive of all resources available, nor does inclusion of a group in this list suggest endorsement or promotion of a particular resource. General Hospice of Michigan Serving Michigan. Offering grief support to the community. hom.org. New Hope Center for Grief Support Serving Michigan. Offering grief support to the community. newhopecenter.net. Safe Harbor Serving Oakland County. Offering grief support to anyone grieving the death of a loved one. sullivanfuneraldirectors.com. Walk With Me Serving Macomb County. Offering grief support to anyone grieving the death of a loved one. trinityfamilycounseling.com. Widowed Persons Service Serving Grand Rapids, MI. Offering grief support for widowed men and women. wpsgr.org. 14
Children and Teens Ele s Place Serving Ann Arbor, Grand Rapids, and Lansing. Support for grieving children and teens. Elesplace.org. St. John Providence Health System Open Arms Grief Support Serving Detroit, MI. Offer school-based grief support groups operate at schools throughout Metropolitan Detroit during the school day. stjohnprovidence.org/openarms/. SandCastles Serving the metro Detroit area. Offering grief support for children and families. Aboutsandcastles.org Parents Bereaved Parents of the USA Serving Copper County and Macomb County. Support for grieving parents. Bereavedparentsusa.org. Compassionate Friends Supporting family after a child dies. Compassionatefriends.org Parents of Murdered Children, Inc. Serving Detroit, Flint, and Saginaw. Pomc.com. 15
Suicide American Foundation for Suicide Prevention This is also for survivors of suicide Afsp.org American Association of Suicidology Suicide Survivor Groups. Provides list of local chapters. Suicidology.org List Current to March 2015. 16
Gift of Life Michigan Tissue Partners Gift of Life Michigan works with the following organizations for the processing and distribution of life-enhancing donated tissue grafts. Axogen, Inc. For-profit, domestic and international organization dedicated to recovery and transplantation of nerves. www.axogeninc.com CellRight Technologies For-profit, domestic and international company producing bone, tendon, cartilage, ligament, and skin grafts. www.cellrighttechnologies.com Community Tissue Services (CTS) Not-for-profit, domestic and international company producing bone, tendon, cartilage, ligament, skin, and vein grafts. To learn more: www.communitytissue.org CryoLife, Inc. For-profit, domestic and international company producing heart valve and vein grafts. www.cryolife.com CytoNet For-profit, domestic and international company producing liver cell (hepatocyte) infusion preparations to treat liver disease. www.cytonetllc.net 17
Lattice Biologics, LLC For-profit, domestic and international company producing bone grafts. Www.latticebiologics.com LifeNet Health Not-for-profit, domestic and international company producing bone, tendon, cartilage, ligament, heart valve and vein grafts. To learn more: www.lifenethealth.org Musculoskeletal Transplant Foundation Not-for-profit, domestic and international company producing bone, tendon, cartilage, ligament and skin grafts. Skin may be used for wound healing surgery, breast reconstruction following mastectomy for cancer, and genitourinary applications. www.mtf.org National Disease Research Interchange Not-for-profit, domestic company that distributes organs for medical education and research. www.ndriresource.org Pinnacle Transplant Technologies For-profit, domestic and international Company producing bone, tendon, cartilage, ligament, and skin grafts. www.pinnacletransplant.com Regeneration Technologies, Inc. Not-for-profit, domestic and international company producing bone, tendon, cartilage, ligament, and skin grafts. www.rtidonorservices.org List current to December 2015 Version 2015-12 750 Printed 18
19
The power to heal lives. www. giftoflifemichigan.org General (866) 500-5801 24 Hour Customer Service Line: (866) 500-5801, ext. 1411 Fax: (734) 973-3133 3861 Research Park Drive Ann Arbor, Michigan 48108 www.eversightvision.org/michigan (800) 247-7250 Fax: (734) 780-2111 4889 Venture Drive Ann Arbor, Michigan 48108 20